Neuropathy ?

jloe
jloe Member Posts: 174
edited March 2014 in Ovarian Cancer #1
I am waiting for my doctor to get back with me but thought I would check with you all too. Have you ever had a neuropathy sensation that is a sharp electrical shock feeling go up your back and neck? I had this with another chemo treatment along time ago but I've had so many treatments in the last 4 1/2 years that I can't remember which one I had this with. I am currently on Avastin every 3 weeks and daily oral Cytoxin and for some reason did not think that these 2 would cause neuropathy. I also have clumsy out of balance problems but never tingling of the feet or hands.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Did you get a Nuelasta shot?
    The last 2 rounds of Doxil I was given a Nuelasta shot the next day. The next 2 days, each time, I had those shooting pulses of pain up my spinal column that ended at the neck. If I changed position or stood up, it would stop. It was most painful if I bent down to pick up something or when I was sitting on the toilet. I was so sure the 1st time that it was the malignant para-aortic lymph node growing and pressing on my spine. But after 2 days it went away both times and my oncologist said it was most likely the famous Nuelasta bone pain. (although I never got any bone pain from Nuepogen or the 1 round of Nuelasta I had back in 2009.) So I was wondering if it might be Nuelasta.

    If not, someone on the Uterine Cancer Board posted a similar symptom and it was a form of nueropathy that seems to flare up and go away as the chemo works through your system.
  • mopar
    mopar Member Posts: 1,972 Member
    YUP!
    Although I don't recall getting them during my chemo treatments (carbo/taxol in 2000 and in 2006), I sure have been experiencing them these last years. I spoke of this in earlier discussion on this board because someone else mentioned something similar. I get them sometimes starting in the abdomen and working it's way up to the chest. It's a very funny, tingly, electrical like sensation and I notice it mostly when I first wake up in the morning, or even if I wake up suddenly in the middle of the night. Sure can't explain it, and I know if I mentioned it to my doctor he wouldn't have a clue either. It's just too vague to describe. Hope yours ease up soon!

    (((HUGS)))
    Monika
  • jloe
    jloe Member Posts: 174

    Did you get a Nuelasta shot?
    The last 2 rounds of Doxil I was given a Nuelasta shot the next day. The next 2 days, each time, I had those shooting pulses of pain up my spinal column that ended at the neck. If I changed position or stood up, it would stop. It was most painful if I bent down to pick up something or when I was sitting on the toilet. I was so sure the 1st time that it was the malignant para-aortic lymph node growing and pressing on my spine. But after 2 days it went away both times and my oncologist said it was most likely the famous Nuelasta bone pain. (although I never got any bone pain from Nuepogen or the 1 round of Nuelasta I had back in 2009.) So I was wondering if it might be Nuelasta.

    If not, someone on the Uterine Cancer Board posted a similar symptom and it was a form of nueropathy that seems to flare up and go away as the chemo works through your system.

    No Nuelasta for these treatments
    Lina,
    I've had many of those in the past and only experienced a stiff neck the next day. I have had such good luck and almost no side efects with these treatments so far (7 Avastin) that I am concerned that this could happen so late into the treatments. I hope is just the neuropathy and will soon fade. Thanks for your help.

    J
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    mopar said:

    YUP!
    Although I don't recall getting them during my chemo treatments (carbo/taxol in 2000 and in 2006), I sure have been experiencing them these last years. I spoke of this in earlier discussion on this board because someone else mentioned something similar. I get them sometimes starting in the abdomen and working it's way up to the chest. It's a very funny, tingly, electrical like sensation and I notice it mostly when I first wake up in the morning, or even if I wake up suddenly in the middle of the night. Sure can't explain it, and I know if I mentioned it to my doctor he wouldn't have a clue either. It's just too vague to describe. Hope yours ease up soon!

    (((HUGS)))
    Monika

    nueropathy
    I am on my 7th round of taxol and carboplantin and have had numbness in my feet eversince I told my md ,stated in it ease up over time, hasn't yet. I sleep with socks on . Don't want to take anyother drugs I am going to learn to live with it .Joined my local YMCA and they offer water aerobics Helps me feel better for a while
  • gdpawel
    gdpawel Member Posts: 523 Member
    Peripheral Neuropathy
    Just a little treatise on peripheral neuropathy.

    There are three major groups of nerves in the human body.

    1. The peripheral nerves that carry information to and from the limbs.

    2. The nerves that supply the bowels and other internal organs.

    3. The nerves of the head which connect to the ears, eyes, taste buds, etc.

    Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

    Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves.

    Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids, platinum drugs and the taxanes. These drugs have the potential of interfering with nerve function.

    You may notice symptoms in different areas of your body depending on which groups of nerves are affected.

    Symptoms in the hands and feet happen when peripheral nerve damage happens. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position.

    If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

    When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed.

    Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus (ringing in the ears). Vision can very occasionally be affected.

    A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

    Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

    There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful.

    Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

    Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:

    Cisplatinum (Platinol)
    Carboplatin (Paraplatin)
    Vincristine (Oncovin)
    Vinblastine (Velban)
    Etoposide/VP-16 (VePesid)
    Cytarabine (Cytosar, Ara-C)
    Hexamethylmelamine (Hexalen)
    Suramin
    Paclitaxel (Taxol) and Docetaxel (Taxotere)
    Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).
  • linda1120
    linda1120 Member Posts: 389
    gdpawel said:

    Peripheral Neuropathy
    Just a little treatise on peripheral neuropathy.

    There are three major groups of nerves in the human body.

    1. The peripheral nerves that carry information to and from the limbs.

    2. The nerves that supply the bowels and other internal organs.

    3. The nerves of the head which connect to the ears, eyes, taste buds, etc.

    Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

    Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves.

    Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids, platinum drugs and the taxanes. These drugs have the potential of interfering with nerve function.

    You may notice symptoms in different areas of your body depending on which groups of nerves are affected.

    Symptoms in the hands and feet happen when peripheral nerve damage happens. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position.

    If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

    When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed.

    Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus (ringing in the ears). Vision can very occasionally be affected.

    A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

    Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

    There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful.

    Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

    Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:

    Cisplatinum (Platinol)
    Carboplatin (Paraplatin)
    Vincristine (Oncovin)
    Vinblastine (Velban)
    Etoposide/VP-16 (VePesid)
    Cytarabine (Cytosar, Ara-C)
    Hexamethylmelamine (Hexalen)
    Suramin
    Paclitaxel (Taxol) and Docetaxel (Taxotere)
    Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

    Neuropathy
    I am twelve years out from ovca treatments of Taxol and Carboplatin, and still deal with severe neuropathy in my legs,feet and hands, with the feet being the worst. I have had to use Miralax for all these years to keep from having constipation as well. The pain can be very difficult to deal with and I was put on Neurontin many years ago. It helps but doesn't make it completely go away. I chalk it up to the price I have paid for survival, one of the many, but NO COMPLAINTS, honestly, I am so very grateful to be a longterm survivor. I have nerve damage in my right ear that has affected my hearing too. I thank you for posting the information as it explains some symptoms I wasn't aware of that I deal with.
  • jloe
    jloe Member Posts: 174
    gdpawel said:

    Peripheral Neuropathy
    Just a little treatise on peripheral neuropathy.

    There are three major groups of nerves in the human body.

    1. The peripheral nerves that carry information to and from the limbs.

    2. The nerves that supply the bowels and other internal organs.

    3. The nerves of the head which connect to the ears, eyes, taste buds, etc.

    Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

    Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves.

    Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids, platinum drugs and the taxanes. These drugs have the potential of interfering with nerve function.

    You may notice symptoms in different areas of your body depending on which groups of nerves are affected.

    Symptoms in the hands and feet happen when peripheral nerve damage happens. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position.

    If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

    When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed.

    Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus (ringing in the ears). Vision can very occasionally be affected.

    A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

    Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

    There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful.

    Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

    Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:

    Cisplatinum (Platinol)
    Carboplatin (Paraplatin)
    Vincristine (Oncovin)
    Vinblastine (Velban)
    Etoposide/VP-16 (VePesid)
    Cytarabine (Cytosar, Ara-C)
    Hexamethylmelamine (Hexalen)
    Suramin
    Paclitaxel (Taxol) and Docetaxel (Taxotere)
    Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

    Thank you
    This is very helpful and I suspected that a lot of the unusal feeling are related to the chemo.